The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

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Thursday, 14 April 2016

Making peace with the past...

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I love the way blogging allows me to channel my energy and thoughts through writing, but sadly in order to remain unique within the context of a chronic illness and disability blog, I have to often revist my past. I have to divulge in to really difficult subjects and topics and throughout this entire process, continuously bring my own experiences to the table. I do so in the hope of helping others realise that they are not alone in what they may be experiencing in the world of chronic illness. Mentally, this can be really quite difficult at times, but it was a necessary path that I once chose many years ago. It was not forced upon me and served its purpose for a while, becoming something that I gave a lot of thought to and decided to stick with to see where it would take me. There have been many times recently that I have sadly felt some dread towards creating a new post. I feel this way simply because it often means that I have to take a couple of steps back in my mentality. I have to get into a head space of putting myself back in the situations of how I once felt in order to connect on a personal level with others and sometimes, this can do more harm than good within my own progress. I never wanted that to happen with my blog and I feel terrible for expressing that thought, as it comes from a place of wanting to help others and knowing how isolating chronic illness can be.

Recently, I came to terms with where I am possibly going wrong. I found my niche in the blogging world, however that instigated with negative underlines. It became a space to share the negativity that I needed to get off my chest in my corner of the Internet. It might not have been apparent to those who read my blog, but to me I felt very unhappy with my content. I realised how negative illness made me feel and how many thoughts I had on the topic. One thought would lead to another where I completely convinced myself that my life was absolutely rubbish and going no where. I think it actually takes a lot for a person to admit they were wrong and wish they would have made a change much sooner. Over the last 15 months, I have really tried to change the context in which I project my voice. I have made my platform and content more of a positive, rational and uplifting place, yet still staying true to my heart in refusing to sugar coat the complexity of day to day life with an illness and disability in my quest for much needed awareness. I have forced myself to become more positive and I have typically looked for the silver lining even when the clouds feel so incredibly dull and grey. It has made a big difference, but it is still not exactly where I need to be. Yet all progress is good progress and I am pleased I have made the initial effort to re correct and remould my thought patterns within illness and disability.

When I look back on my life, something I know for a fact I would have changed sooner is my overal happiness over these last few years. I completely compromised my happiness from the age I became debilitated by my undiagnosed illness and replaced it with a deep depression. I have spent the last decade as a completely broken person. To make this worse, I was a mere teenager when it all started. I am an adult now, with a lot more to learn and a life to live and I do not want to waste anymore time being dragged down by these circumstances. If those circumstances were given the power, they would drag me down forever. I want to make the conscious decision to say goodbye to all of the extras that come with chronic illness and disability and instead use that energy towards putting my efforts in to optimism and attempted happiness, despite the circumstances. I know I will live to regret my decision if I choose differently. Sometimes negativity and depression just continues to breed within your mindset. It almost became normal to feel so depressed and weighed down by my troubles within illness and disability. That is really no life to lead and you constantly feel as if you have the weight of the world on your shoulders. It is completely abnormal and just accommodating. It brings nothing but distress on top of illness, which is really not needed.

There is so much of my past within illness and disability that I can't quite comprehend. Some of it may never make sense, but it has happened and many days, months and years have passed. Yet I still cling to the bad moments and scientifically, want to know all the answers to get to the bottom of it. Nothing can bring a person comfort when they have missed out on so much of life other than the fact that it has now passed and should be forgotten. I am using all of that limited energy on making my past a focus point within my present. By focusing on all my illness has caused and all it has left me with or without, rather than reminding myself that I have compleltey changed for the better because of my illnesses. Illness and disability have made me tough, made me grow up super fast, made me think of the bugger picture but all of this has been for the better. You always want what you can not have but the past needs to become a closed book in order to move on to better and brighter things, I certainly do not want to allow it internally to become my defining moment because it really has been. When I think of my qualities, it is typically that I am deeply depressed in my everyday nature. The process of readressing where it all went wrong or how I was robbed of my childhood and being a young adult comes to my mind far to often. How I swapped basically everything normal to live many years of my life from my bed from age thirteen. I don't want to be a victim but a fighter and a survivor of adversity and I know this means finally saying goodbye to my difficult past caused by chronic illness.

I want to finally make peace with what has happened throughout my life. I have lived for a very long time just accepting what has happened with an accommodating outlook. Yet that often makes me feel even more sad, angry, annoyed and confused. I have always lived in this 'punishment' phase. Everyday I would subconsciously feed into that negativity, believing that I really deserved to feel the way I do because I am predominantly bed bound with my illnesses. I convinced myself that no good would ever come of my life, that I will always be deeply unhappy and alone and that I was sent here to suffer in many ways. It's that vicious cycle of believing that things are going to be non changeable and indefinite from one significant outcome in your life. It is such an irrational and mean thought to project upon yourself every day for years and years on end. It is simply adding fuel to a fire that was inevitable to start with, yet I took the burden as a personal attack for the last ten years. I instantly blamed myself, completely hated myself and thought I was the lowest of the low. However there was no defining moment where I made myself have an illness. There was nothing I could have done to change what was meant to be and that is something that I need to make peace with. I feel foolish that it has taken me this long to acknowledge how toxic it is capable of being. I just want to release the constant guilt and move on in a positive manner. It may be the turning point I have been searching for all of these years rather than an attempt to cover it all up and dismiss the elephant in the room.

The cycle needs to come to an end in order to move on to a brighter and optimistic future where there is hope. I feel bored and completely drained of mourning and feeling sad, low, incredibly depressed, less deserving and unhappy because of my illnesses and disability. I accept that my illnesses will be a part of me for life, I accept that sadness and down days will be no stranger to that equation but I can not allow this current abnormality to be a constant mentality for another decade. It has become far too familiar and comforting and that is where I have been going wrong all of these years. I kind of convinced myself I deserved to feel such a way, that I was much less of a person and that I would amount to absolutely nothing. For those reasons I became stuck in the cycle of completely dreading my future and therefore implementing a sadness over a circumstance that is currently unpredictable. Finally, I want to set it free and make the choice to move forward positively, to change and adapt all I can and from this point onward, creating a beautiful life for myself in the process. A life that I have absolutely no idea how it will unfold.

We can not go backwards, only forwards. Yet sometimes our minds tend to gravitate towards all that has hurt or unsettled us. I would be so disappointed in myself a year from now if I had outright recognised where I was going wrong, yet failed to do anything about it to change the cycle, once and for all. We only have one life and tomorrow is not promised for any of us. I know I would be so upset at myself if I continued to allow my illnesses to make me such a miserable and depressed person, because at the end of the day I live to make myself happy. I do not live for my illnesses, I just live with them. Despite the fact illness and disability has made up a large part of my character, it has turned me into the person I am today. Like any situation, part of that baggage is positive and part negative.

I try to dust myself off from my really low moments and I spot where changes need to be made faster these days. Some days or weeks, I feel really stuck but I do believe that is simply living with a ever changing disability. I know that many people often say that they are 'sick of being of sick', I am sick of the power an illness tries to over every little piece of your mind, body and soul. For the most part, I want to allow myself to implement the positive changes in order to change my life for the better in an adaptive manner. A life I can look forward to and a life that fills me with hope and prosperity. I do believe eventually, everything can be worked on in some shape or form, finally realigning your puzzle. Like anything worth having, it just takes a lot of patience and hard work.

A chronic pain sufferer once told me that they got to a point where they made a decision to not spend the majority of their time on this earth being sad anymore. It didn't make sense back then but it does now, it is just so draining and a never ending cycle. When a point in your acceptance clicks, you just know a big change needs to arrive. Mine has taken a decade. I now realise I have so much more important things to focus my attention upon. I have so much to be using my precious and limited energy over instead of the daily questioning of 'why has this happened to me?'. When you physically feel in a predicament, it solely lies in teaching your mentality how you deserve to approach your everyday life. I want to look forward to life and feel excited like I once did, before pain took a hold do my daily exisitence and turned me into a person who completely dreads life and their future. A person who feels more concern and worry than freedom and excitement. Living with a chronic illness
becomes a never ending pit of concern and joy is completely sucked out of your life.

We should attempt to make life as beautiful as we can despite the circumstances we are faced with. We should not deny ourselves of joy just because we are consumed by pain. I would remain extremely annoyed with myself if I remained in this cycle of doom, knowing full well that I had to move on but remained incredibly stuck. Don't get me wrong, I know that this outlook has been inside of me for a long time, it just tends to play a huge tug of war everyday. Always pulling me back into an unhappy mindset where life is difficult and then some. I know that my thoughts and outlook need to be ever so slightly tweeked with room to grow with influences such as my mum, my friends in similar circumstances, my healthy friends. Everything eventually falls into place guiding you to a better outlook and stance for where you are currently in life.

I wanted to keep those of you who take the time to read my blog in the loop. When I weigh up the pros and cons, I understand that it is a positive option for me to continue my blog. It gives me a purpose in my life and I want to help in the ways that I can. Blogging can be challenging but it is no more challenging than living with multiple, rare chronic illnesses. It is a task that I am willing to continue because I know I will also gain a lot through helping others.

I typically find an overall peace in connecting with others and within the thought that my own experiences may have helped atleast one person. We evolve constantly as people in this big wide world and I want to adapt to that rather than keep running back into the storm, always wanting more answers that are just not available. However, I think it is finally time to close the book on the past and the gateway to revisiting negativity. Continuously revisiting the really difficult periods that life has thrown my way and allowing myself to step back into a place that I always wanted to run from is doing my current life absolutely no favours. It simply leaves me to grieve for what I have lost all over again rather than move myself forward in life. Whilst I am not completely sure how this will affect my blog posts in the future and it feels like a big risk, I would like to think that as long as I remain true to myself and roll with how I feel in my heart, it will still impose a positive influence within my life and possibly the life of someone else.

There comes a day where you have to make a choice rather than living with the accomaditing feeling of depression in a life long illness. I have had really incredible people guiding me to this point of letting go as much as possible and moving forward to better days. It almost became abnormal for me to not see things from a really depressed perspective for ten long years. A decade which I know I will regret not attempting to adapt sooner. So I hope some of you can join me as I try to welcome with open arms a new and improved mindset that uplifts me more. A mindset that will take a lot of work but allows me to feel excited for life and proud of myself ways I never have before. I'm not completely sure how I will get there, but I am ready for change and I really want to move on even if my illnesses remain much the same. Life with multiple chronic illnesses and disability is granted to be painful, but it doesn't have to be deeply unhappy.

Inspiring! When I was depressed a friend told me that I had to choose positivity. Initially I was upset, thinking it was such a flippant comment given how much suffering I was going through. But over time, and especially after taking a mindfulness meditation course I realized that I can choose what I think and what feelings I dwell on. I can concentrate on celebrating my small daily accomplishments or I can grieve what I couldn't do. This is made all the difference in my quality of life!